Persy began his second cycle of the HITS protocol (low dose chemo + immunotherapy) on September 12th. Each cycle follows the same schedule so it was good to know what to expect in that sense. Still, we were filled with anxiety over how the treatments would go and how P would feel throughout. Overall, we were completely amazed by how well Persy did during this treatment cycle, especially compared to cycle 1. Each day he bounced back quickly after treatment with good energy, an appetite, and a happy disposition. We even enjoyed some fun at the park following chemo one day! It was such a relief that P could really be himself throughout the entire two weeks (7 days of treatment).
Despite mostly feeling good, Persy did have to deal with more diarrhea throughout treatment, most likely a side effect of the irinotecan (chemo). However, his love of milk kept him well hydrated and otherwise feeling fine. All four of the 3F8 infusions went smoothly, which was the biggest relief of all. Still, Persy did have some terrible pain throughout each one. It is so hard to describe the difficulty of hearing your child scream out in pain and ask for help when there is absolutely nothing you can do to stop the pain. All you can do is comfort him and tell him that it will not last and that he is strong enough to get through it. The other thing you do is pray. You pray that God will take the pain away. That He will heal Persy’s body through these treatments. And that He will remove all of the negative memories, letting only the good ones live on in Persy’s mind.
During the weekend between 3F8 infusions we were able to sneak off to Westport for a few days. As always our visit to Connecticut was a breath of fresh air. Being in such a warm environment, surrounded by so much love, laughter, and delicious food is exactly what we needed to help us through the next week of treatments. While there, Persy got to experience his first petting zoo when we visited a local animal farm. He loved seeing the animals (more than feeding them 😂) and playing on the playground there.
After finishing treatment on Thursday, Mama flew home to spend some quality time with Kep, while Dada and Persy got some one-on-one time in the city. They even got to hang out with Uncle Kim for a bit, who was kind enough to give them a ride to the airport. On Sunday morning the Burnette brothers were reunited once again. These two boys love each other so very much, and their bond is never more evident than it is during these reunions. As usual Persy is thriving being back home and back in his element. We are so grateful to have 3 full weeks off before returning to New York for scans and cycle 3 of HITS.
As we begin to near the 1 year anniversary of Persy’s diagnosis we continue to be overwhelmed by the love and support we have received over the past 10 months. We have come to realize that there are far more people praying for P and following his journey than we even know about, a fact that brings us great comfort. We appreciate every thought, every prayer, known and unknown. We hear every kind word; we see every thoughtful gesture. And we are constantly humbled by your unwavering support. 💛